Table Of ContentRegulating Preimplantation Genetic Diagnosis
in the United States
DOI: 10.1057/9781137515445.0001
Palgrave Series in Bioethics and Public Policy
Series Editor: Sheldon Krimsky,the Lenore Stern Professor of Humanities and Social Sciences
and Adjunct Professor of Public Health and Community Medicine at Tufts University, USA.
Professor Krimsky is the author, co-author, and editor of fourteen books includingGenetic
Justice: DNA Databanks, Criminal Investigations and Civil Liberties,awarded a gold medal by
the Independent Publishers in 2011.Professor Krimsky served on the National Institutes of
Health’s Recombinant DNA Advisory Committee and was a consultant to the Presidential
Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral
Research and to the Congressional Office of Technology Assessment. Recently, he served as
associate editor, forBioethics, 2014, a reference volume for the field.
Biotechnology continues to impact populations in myriad ways-influencing contemporary
issues in food supply, genetic therapy, health care, biosecurity, terrorism, criminal justice,
food supply, and environmental engineering among many other aspects of daily life. The
Palgrave Series in Bioethics and Public Policyy seeks to promote interdisciplinary research that
analyzes and assesses the social, environmental, and moral ramifications of where this tech-
nology is taking us. With a wide range of topics within bioethics open to the series, this series
will provide a home for cutting-edge research that bridges the divide between the natural and
social sciences. This series will also attract a dynamic and varied assortment of scholars to
provide comprehensive evaluations of where biotechnology is taking our society-and most
importantly, if these directions are being forged appropriately and ethically.
Titles include:
Michelle Bayefsky and Bruce Jennings
REGULATING PREIMPLANTATION GENETIC DIAGNOSIS IN THEUUUNITEDSTATES
The Limits of Unlimited Selection
DOI: 10.1057/9781137515445.0001
Regulating
Preimplantation
Genetic Diagnosis
in the United States:
The Limits of
Unlimited Selection
Michelle Bayefsky
and
Bruce Jennings
DOI: 10.1057/9781137515445.0001
regulating preimplantation genetic diagnosis in the united states
Copyright © Michelle Bayefsky and Bruce Jennings, 2015.
Softcover reprint of the hardcover 1st edition 2015 978-1-137-51543-8
All rights reserved.
First published in 2015 by
PALGRAVE MACMILLAN®
in the United States—a division of St. Martin’s Press LLC,
175 Fift h Avenue, New York, NY 10010.
Where this book is distributed in the UK, Europe and the rest of the world,
this is by Palgrave Macmillan, a division of Macmillan Publishers Limited,
registered in England, company number 785998, of Houndmills,
Basingstoke, Hampshire RG21 6XS.
Palgrave Macmillan is the global academic imprint of the above companies
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Palgrave® and Macmillan® are registered trademarks in the United States,
the United Kingdom, Europe and other countries.
ISBN: 978–1–137–51544–5 PDF
ISBN: 978–1–349-50640-8
Library of Congress Cataloging-in-Publication Data is available
from the Library of Congress.
A catalogue record of the book is available from the British Library.
First edition:2015
www.palgrave.com/pivot
doi: 10.1057/9781137515445
Contents
Acknowledgments vii
1 Introduction 1
Preimplantation genetic diagnosis:
the technique and its uses 3
PGD practice in the United States 6
Ethical controversies: an overview 7
The regulation of PGD 11
Health care financing and coverage of PGD 12
2 The Ethics of PGD and Its Relevance to
Regulation 18
The ethical critique of PGD: mastery
and acceptance 20
Parental duties and the genetic shaping of
children 24
The ethical case for PGD: procreative
beneficence 31
3 Drawing Ethical Lines 39
Defining disease 40
Selecting against deafness 44
Selecting for deafness 48
Adult onset diseases 50
Savior siblings: creating one life for the
sake of another 52
Elective sex selection 54
4 Regulating PGD in Practice 59
Reproductive autonomy and Its limits 60
DOI: 10.1057/9781137515445.0001 v
vi Contents
Eugenics and its implications for PGD 65
Options for regulation 68
Summary: the pros and cons of government
regulation vs. professional self-regulation 77
R egulatory flexibility in scientific and moral
gray areas: the example of the HFEA 79
Who should decide? 81
The bottom line 82
5 Paying for PGD 89
Conclusion 96
Bibliography 100
Index 110
DOI: 10.1057/9781137515445.0001
Acknowledgments
We wish to thank Professor Stephen Latham (Director,
Yale Interdisciplinary Center for Bioethics) for his advice
and support, and for carefully reading and comment-
ing on a draft of this book. We are also grateful to those
who agreed to be interviewed, and whose insights and
opinions we have included. Specifically (in chronological
order), we thank Dr Mark Hughes, Founder and Director
of Genesis Genetics; Dr Paula Amato, Chair of the Ethics
Committee of the American Society for Reproductive
Medicine; Dr Santiago Munné, Founder and Director of
Reprogenetics; Ms Barbara Collura, President andCEO of
RESOLLLVE; ProfessorAnita Silvers, Chair of Philosophy at
San Francisco State University; Professor Laura Mauldin,
Assistant Professor in the Women’s,Gender and Sexuality
Studies, Department of the University of Connecticut;
Professor Leslie Francis, Distinguished Professor of
Philosophy, Associate Dean for Faculty Research and
Development at the University of UUUtah College of Law;
and Ms Alison Lashwood, Clinical Lead in PGD at the
Centre for Preimplantation Genetic Diagnosis at Guy’s
and St Thomas’ Hospital inLondon, England.In addition,
we would like to express our appreciation to those who
shared with us their wisdom and understanding of the field
over the course of our research. In particular, we would
like to thank Dr Thomas Murray, President Emeritus
and Senior Research Scholar of The Hastings Center for
Bioethics; Professor Arthur Caplan, Director of NYU
Langone Division of Medical Ethics; Dr Dan Goldschlag,
OB/GYN and specialist in reproductive endocrinology
DOI: 10.1057/9781137515445.0002 vii
viii Acknowledgments
and infertility at the Weill Cornell Center for Reproductive Medicine;
Dr Pasquale Patrizio, OB/GYN and specialist in reproductive endo-
crinology and infertility at the Yale Fertility Center; Ms Lee Rubin-
Collins, former board member and volunteer at RESOLLLVE; Ms Kristin
MacCutcheon, PGD nurse coordinator at the Boston IVF Clinic; and
Ms Marymichele Delaney, Associate Director of Benefits at Wellesley.
DOI: 10.1057/9781137515445.0002
1
Introduction
Abstract: In this chapter, we lay out the potential and
actual uses of preimplantation genetic diagnosis (PGD).
We include an explanation of the medical process and
current limitations of reproductive medicine and genetic
sequencing technology, as well as a presentation of existing
empirical data on the use of PGD in the United States. We
then briefly summarize the ethical dilemmas surrounding
various uses of PGD, including nonmedical sex selection,
selection against adult onset diseases, selection for a tissue
match for a sick sibling, and selection for a disability such
as deafness. The chapter also includes a description of
the current regulatory landscape for PGD in the United
States as compared to two Western European countries
(the UK and France), and ends with a discussion of the
relationships between health care financing in the United
States, insurance coverage of PGD, and the current dearth
of regulation.
Bayefsky, Michelle and Bruce Jennings. Regulating
Preimplantation Genetic Diagnosis in the United States:
The Limits of Unlimited Selection. New York: Palgrave
Macmillan, 2015.doi: 10.1057/9781137515445.0003.
DOI: 10.1057/9781137515445.0003
